We are Cavernoma Alliance UK

Founded in 2005, our aim is to provide support and information for all those affected by cavernoma including friends, family, carers and professionals.

With over 2800 members in the UK and worldwide, the charity aims to raise awareness of this relatively unknown condition throughout the general public as well as the medical community.

What is a cavernoma?

A cavernoma is made up of abnormal blood vessels and can be found in the brain and/or spinal cord and looks like a raspberry.

1 person in 600, in the UK, has a brain cavernoma without symptoms (asymptomatic). This equates to roughly 90,000 people – enough to fill Wembley Stadium. A spinal cavernoma is rarer than a brain cavernoma.

In this video, hear clinicians and members talking about their experiences of cavernoma. 

Our services

Telephone Support

Our telephone support line is open 10am - 4pm, Monday to Friday

Email Support

You can reach us via email at any time, and we aim to respond as quickly as possible

Events & Annual Forum

We organise multiple events around the country

CaverBuddies

On going peer support when you need it most

Professional Lectures

Presentation and research events around the country

Meet Ups

Join us, and members from your local area for a coffee & chat

Therapy

Therapy for adults, children and carers to work though concerns

Webinars

Online meetings, presentations & chats providing information & advice

Carers Support

Support, chat and advice for carers of those with cavernoma

What our members say...

CAUK and all its members have made me feel ‘normal’. I am among people who know exactly how I feel. It’s as simple as that. I am not a person with a rare condition here, I am part of a group of people with the same condition. In real life I might never meet someone with a cavernoma,but here everyone has one/many. So I’m not an oddity here.
Lorna, Scotland
Member since 2014
CAUK is incredible. It provides invaluable support online, an informative website with vital information, access to professional opinions and face to face meetings at events, amazing lectures and the opportunity to meet others who have experienced cavernoma.
A world without CAUK doesn’t bear thinking about!
Abi, Surry
Member since 2012

Get in touch with us

available from 10:00 – 16:00

Home Learning Resources

We have spoken to a number of teaching staff, done a little research and have put together a few resources which may help you to help your children. Hopefully it might take the pressure off by showing you some new ideas, offer support and show you that you are doing a great job.

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David’s Birthday Fundraiser; £8000 for 80 years

Our wonderful science advisor and all-round key player at CAUK, David White CBE, is turning 80 years old! David has seen CAUK expand amazingly since the early 2000’s. He would love you to join his campaign for his 80th birthday to raise funds as a thank you for the wonderful support that CAUK has provided to us all since its foundation in 2005.

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They said No, I said Yes! with Will Sears

Will is an inspirational 14 year old member of CAUK through the Caverfamiles group. In this webinar where he is accompanied by his mum, he shares the story of his cavernoma and epilepsy journey and how he continues to live a full, exciting and happy life doing the things he loves, despite his condition

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CARE Pilot Trial Annoucement

The Cavernomas A Randomised Effectiveness (CARE) pilot trial CAUK is the Patient Group in a consortium also including senior clinicians with a special interest in

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